Westminster Virtual Rare Disease Day 2022 Reception
23 February 2022
Nerve Tumours UK joined the annual international event aimed at raising awareness and highlighting the needs of people with rare diseases.
There are over 6000 rare diseases affecting over 3.5 million people across the UK.
Collectively, rare diseases are not rare.
Today, the rare community came together to raise awareness of the common issues affecting those living with rare conditions.
We joined the Westminster Rare Disease Digital Forum, chaired by Liz Twist, MP and Chair of the APPG on Rare, Genetic and Undiagnosed Conditions, and hosted by the Genetic Alliance.
_1024x768.jpg)
We heard from people affected by rare conditions, discussing the progress of the National Plans for Rare Diseases, which are due to be launched this year.
Maria Caulfield, the Minister responsible for rare conditions, spoke on the future for rare conditions.
_1024x768.jpg)
The Neurofibromatosis community was represented by Dexter Parker who has Neurofibromatosis Type 1, giving insights on how the condition affects his daily life,
_1024x768.jpg)
now a young aspiring student and a story of determination and hope. Thank you Dexter for your support.

Watch his address to the reception here
Stay tuned on our social channels for Rare Disease Day 2022 on Monday 28th February
Filter News

Andrew’s NF1 Story
Read about Andrews inspirational NF1 story and how he wants to inspire others to achieve their goals!
Read More
Dexter’s NF Documentary Project
Dexter shares his motivations for taking on his NF documentary project & find out how you can watch it
Read More
World NF2 Day 2021 Emily Owen Member of our Board of Trustees Takes over our social
Read More
A Big Thank You to all our Garden Runners!
Find out how our Garden Runners got on this World Neurofibromatosis Awareness Day - May 17 2021
Read More
Centre for Appearance Research (CAR) - Somali Heritage & NF Study
If you are from Somali heritage and have NF, the Centre for Appearance Research (CAR) want to hear from you.
Read More
Shine A Light 2021 Success!
Another incredible year, 92 buildings lighting up blue to Shine a Light on Neurofibromatosis as part of this year’s campaign
Read More
Living Different: Patricks’s NF2 Blog
Read his attempt to build people's understanding of the challenges with disabilities
Read More
Beth’s Novasper Online Dog Show 2021
Find out how you can get involved in this year's fluffiest and loveable online dog show!
Read More
Christian’s Story
Christian's Mum, Ellie, share's their journey with NF & why they decided to get involved with this year's Garden Challenge!
Read More